The NNFF guestbook is the heart of our foundation -- so many people have found kinship and support in each other! Please spend some time reading through the entries made throughout the past three years (click icon on right). Talk about your experience! Keep in mind that if you have an urgent question, you should email Donna or Jackie as we do not review the guestbook on a daily basis!

Jul 3, 1998 - 23:14

My name is: Sandra Lambert

Comments about the web site: It has been awhile since I checked this page. Donna it looks great. I have been working with Jackie to write my daughter's story and has brought back many, many memories. My daugher is a survivor at 2 1/2 years old today and someday understand all that she went through. To everyone out there going through this, my prayers are with you and if anyone needs to talk please email.

I'm from: Negaunne, MI

Email: - slambert@portup.com

How I found the page: -

Jul 7, 1998 - 10:50

My name is: Lisa Heil from Healthy Solutions

Comments about the web site: Donna & Jacklyn, I am so excited to work on this story with you. I think the impact that we can make to create awareness for this issue will be amazing! Ill keep you both aware of the progress of the story as we going along. Take Care...Lisa

I'm from: Ft. Lauderdale Florida

Email: -

How I found the page: -

Jul 7, 1998 - 22:52

My name is: kris moore

Comments about the web site: my cousin's wife, cassie moore, has contracted this terrible disease,all facts and stories will be helpful to me and our family. prayers welcome

I'm from: myers flat ca

Email: - threew@webtv.net

How I found the page: - search

Jul 8, 1998 - 22:27

My name is: Lorraine

Comments about the web site: I have a friend who recently was diagnosed with this illness. It all started with a small cut to his finger, luckily it was caught early and with 10 days in hospital, he appears to be ok, but today he has found a small raised area next to the old infection site.........and he's concerned, the doctors feel this is not another infection.

I'm from: Panama City, Florida USA

Email: - BRITTinFL@aol.com

How I found the page: - searched under Necrotizing Fasciitis

Jul 9, 1998 - 14:59

My name is: SANDRA COUTEE

Comments about the web site: CONCERNED ABOUT A CITIZEN IN PINEVILLE, LA. . SYMTOMS ARE SO SIMILAR BUT WE HAVE NO CONFIRMATION FROM DOCTORS IN THE HOSPITAL WHERE HEIS BEING TREATED SINCE FRIDAY NIGHT(7/3/1998). HE HAS GANGRENE SPREADING THROUGH OUT HIS BODY AT A RAPID PACE. WE DO NOT KNOW WHAT TO BELIEVE AND FEAR THE DOCTORS ARE NOT FAMILAR WITH STREP A. THANKS

I'm from: Pineville, La.

Email: - POODLE109@AOL.COM

How I found the page: - TRAIL AND ERROR

Jul 12, 1998 - 11:08

My name is: Carolyn Thickett

Comments about the web site: Information needs to be more accessable, like in a newspaper. If people don't know about it there is no way they are going to search for it on the internet. Only people who have been already affected (through a friend or family member) are going to search out information. The rest of the population needs to be informed, too.

I'm from: Mississauga, ON

Email: -

How I found the page: - Searched

Jul 17, 1998 - 10:01

My name is: Colleen Patchett

Comments about the web site: I found the information that I downloaded very informative and useful. I plan on returning to this site for any future questions that I may have.

I'm from: Hamilton, Ontario Canada

Email: - patchett@sentex.net

How I found the page: - By doing a search for information on Ritalin and Flesh Eating Disease

Jul 17, 1998 - 14:29

My name is: Marsha Brown

Comments about the web site:

I'm from:

Email: -

How I found the page: -

Jul 17, 1998 - 14:35

My name is: Carol A. Rolfe

Comments about the web site: Am just checking in with the new entries. I also am a survivor of this horrible disease. According to some information that was give to me by Jackie (one of the co-founders of NNFF), the piece states that this infection has been around for awhile and a good infectious disease doctor should be educated at least somewhat in this. Please check in with me if you would like to chat about this and give support where needed. My onset occurred in November of 1997 and I am now feeling back to myself as before only a little more tired and "hotter" due to the extreme skin grafting that I had to encounter. Keep up all the good work and support and information Donna and Jackie. And to all those who are victums, family and friends of victums, my pray are with all of you.

I'm from: Madison, WI

Email: - Petii@aol.com

How I found the page: - Revisiting

Jul 19, 1998 - 18:58

My name is: Jay Swartzlander

Comments about the web site: I am currently recovering from skin graft surgery to my left arm following two debreeding surgeries in early June. I thought they were going to remove the arm. The doctors told me that it was a life and limb threatening situation but I didn't realize how serious it really was until I visited this page. I now know how fortunate I am. My prayers and sympathies go out to those who are curently fighting this disease, and to the families of those who have lost the battle.

I'm from: Beaver,PA

Email: - jswartzland@forcomm.net

How I found the page: - typed "flesh eating bacteria" in Yahoo

Jul 20, 1998 - 04:09

My name is: Richard Hamm

Comments about the web site: Helpful information. I have had about 25 cases diagnosed as either hemorrhagic cellulitis and/or necrotizing faciitis over a 5 year period.

I'm from: Winnetka, CA, USA

Email: - hamm@ix.netcom.com

How I found the page: - www.dogpile.com (search engine)

Jul 23, 1998 - 16:48

My name is: Virginia Smead

Comments about the web site: I had Strep A in 1992. I thought I had the flu. In 12 hours I was in the hospital trying to save my right leg. It looked like a severe burn between ankle and knee. After a week in the hospital and 2 more weeks in bed at home I made a complete recovery and can hardly notice the scar anymore. However the skin is rougher where the infection was. I never met anyone one else with this infection before. I'm amazed there is a web site.

I'm from: Marana, Arizona

Email: - gsmead@maranaud.k12.az.us

How I found the page: - just browsing

Jul 27, 1998 - 16:48

My name is: Karen Bohay

Comments about the web site: Last year, in October, my husband was diagnosed with Necrotizing Fasciitis and nearly lost his life. He underwent numerous surgeries, hyperbaric treatments, and many other medical treatments. We were told that he was healed after spending 3 months in the hospital. Recently in May, 1998, he had a relapse and once again was in the hospital with a Strep A infection. Though it was not nearly as severe as the first bout, it was still terrifying until I saw an improvement in him. All I could think of was "Not again", it was very difficult the first time and I didn't know if I could handle everything all over again. He was hospitalized a couple of weeks, followed up with home health care to receive his antibiotics. He is at home recuperating, but up on his feet and doing well. The doctors have told him that his condition will probably be recurring due to the numerous surgeries he has had, he has trouble with the circulation in his leg. He has also been told that he will more than likely be on antibiotics for the rest of his life, as almost any infection that he gets will more than likely settle in his leg. We thought that we were through with everything, but now think that it may never end. All we can do is watch out and try to make sure that he stays healthy. Which is hard to do as the doctors never found out where he caught the disease to begin with.

I'm from: Anadarko, Oklahoma, USA

Email: -

How I found the page: - browing

Jul 27, 1998 - 21:28

My name is:

Comments about the web site: In our local newspaper this morning, it states the odds of "getting killed by flesh-eating bacteria: a million to one". Statement was a "News Sevice Report". The statement was brought to my attention because my husband died of Strep A NF in 1994. I do not agree that the odds are that high and could not convince that to the people that brought the article to my attention. Any comments?

I'm from: US

Email: -

How I found the page: -

Jul 27, 1998 - 22:14

My name is: Noni McCallum

Comments about the web site: I do not know anyone with this terrible disease and have never had it myself, but I wish all the luck in the world to those who may encounter it in this future. Hopefully in the very near future we will find a cure.

I'm from: Geelong, Victoria. Australia

Email: - musicalmacca69@netscape.net

How I found the page: - I was interested in it after a local man was infected with the disease and I looked it up.

Jul 29, 1998 - 02:25

My name is: Pam B.

Comments about the web site: My dad died March 26, 1998 from this disease. The lack of knowledge of this disease on the Dr.'s part, I believe, contributed to my dad's death. Because of the differing opinions, on care and how sick he really was, of the 5 different Dr.'s (primary, 2 surgeons, infectious disease, cardioligist) on the case, my sister and I ended up not speaking to each other by the time my dad died. I feel the Dr.'s did a great disservice to my family. And the hurt will not go away.

I'm from: Las Vegas, Nevada

Email: - PSBLV51@aol.com

How I found the page: - Found it after my dad died, researching what the hell happened!!

Jul 29, 1998 - 23:14

My name is: Tim and Dody Ihnen

Comments about the web site: Tim's father was diagnosed with necrotizing fasciitis approximately three weeks ago. He was flown (flight for life) from our small City to a major trauma center in a neighboring State. He under went three different surgeries to remove the affected area, including his scrotum and all of the muscle used to control his bowels. After a two week period of time, he finally awoke to find himself with a colostomy, and will have to have the reconstructive surgery and skin grafting. Any new or updated information would be greatly appreciated on the bacterial infection. Tim's mother has been with his Dad since the time he left here, and we travel to see them on a weekend basis, after spending the first initial week there.

I'm from: cortez, co.

Email: - tandd @fonenet.com

How I found the page: - researching the bacteria

Jul 31, 1998 - 02:13

My name is: Melinda Anderson

Comments about the web site: Your web site is very good. Sadly, our family just lost our forty year old brother/son to this horrible illness on July 9th. This site has helped us have a little better understanding of this illness.

I'm from: Chandler, Arizona

Email: - gander0896@aol.com

How I found the page: - Someone told us about it.

Jul 31, 1998 - 03:01

My name is: Melinda Anderson

Comments about the web site: Your web site is very good. Sadly, our family just lost our forty year old brother/son to this horrible illness on July 9th. This site has helped us have a little better understanding of this illness. He complained of his right arm hurting one week before he entered the hospital. By the time he went to ER he had a fever, swelling in the area effected, and was vomiting. He was transferred to Good Samaritian hospital because they had a chamber there for him. He never entered it, but had surgery until 4 a.m. on the 9th. There was a posibility that his arm would have to be removed, but instead muscle was removed. All was going very well until they took him back in that evening to change the bandages and debride any more of the area. At 7:30 pm his heart stopped and they gave him a 50% chance of survival. At ll:15 he passed away. This was such a shock to our family. We still can't believe that it has happened.

I'm from: Chandler, Arizona

Email: - gander0896@aol.com

How I found the page: - Someone told us about it.

Aug 1, 1998 - 15:29

My name is: Melissa Sanders

Comments about the web site:

I'm from: Katy Texas

Email: -

How I found the page: - After being in hospital with NF husband came home and looked on internet and found all about it through you all.

Aug 1, 1998 - 20:52

My name is: Pattsy13@AOL.com (Pat Chorma)

Comments about the web site: Thank you so much for this website. My Exhusband was just diagnosed with this bacteria, and I needed more information for me and my children to learn more about it. You're right, there is not enough public knowledge about this bacteria, and more should be learned. I dont know what is going to happen to my Ex. He had his testicles removed yesterday and he is under sedation. It's going to be awful hard when he wakes up to try to explain what happened to him. Thank you for helping me understand a little more about his problem.

I'm from: Milltown, NJ USA

Email: - Pattsy13@AOL.com

How I found the page: - BigFoot

Aug 3, 1998 - 02:36

My name is: Sheri Hardin

Comments about the web site: Hi it's me again. Just checking on some of the new entries that have been made. I noticed quite a few of the new entries were treated by Hyberbaric Oxygen Chambers. I'm really glad to see more of that. I believe that is what saved my life. After alot of removal of infected skin and muscle and 4 treatments in the HBO chamber they had the NF stopped. I hope the doctors start using this treatment more in the future. My prayers go out to everyone who might be going through or who have had this horrible disease. God Bless all of you.

I'm from: Klamath Falls, Oregon

Email: - jrch@cvc.net

How I found the page: - I come here alot. I'm a survivor!

Aug 4, 1998 - 00:41

My name is: Tim & Dody Ihnen

Comments about the web site: Hello again i just come back in to check on any new entrys and found more stories of people affected in one form or another of this horrible illness and its really sad to read the letter written by pam b. in las vegas about her and her sister not speaking after the passing of their father because after all of the freinds,aunts,uncles,cousins go home and get on with their lives your brothers and sisters and i assume your mother are all you have left that understand what your feeling so i sincerley hope you and your sister can TALK out your differance of opions. To sheri hardin i would truly like to hear more about your battle with nf and the hyberbaric oxgen chamber treatments as i said in my last entry my dad will have been in the hospital three weeks tomarrow and i've not heard the term hyberbaric oxygen chamber treatments until now although we are becoming very familer with the terms debreadment [sp?] hydro room [thats were they take my dad to scrub out the gaping wound two or three times a day and cut out any more dead tissue] and heres anthor niffty frase they like to use " compresion ulsers " others would include colostamy bag,catheders,suction and the list goes on and on they [ the doctors ] say that he is getting better and i truly belive that he is but its hard to see any inprovement when he is only awake maybe an hour out of each day after three weeks in the hospital but i do know that the lord responded to our prayers since he is still alive and fighting hard to remain that way in closing i would like to say that my famliy is praying for all the people that have been affected in one way or another by nf and for those that will sadley enough be affected by nf god bless

I'm from: cortez,co

Email: - tandd@fonenet.com

How I found the page: -

Aug 4, 1998 - 15:44

My name is: Tracey Loughney

Comments about the web site: I almost started crying reading some of the stories. I thought I had it bad when I was 8 months pregnant and had the chicken pox. My NF set in within 24 hours and was rushed to surgery. I have a functional arm and all my fingers. I also have my wonderful baby boy who is healthy. Education is what is needed for this. Thank you for taking the time to make this site so others can be aware of what a horrible disease this is. God Bless you all!!!

I'm from: Forest Lake MN

Email: -

How I found the page: - looking up Strep A

Aug 4, 1998 - 16:10

My name is: Lisa Chapala

Comments about the web site: My boyfriend recently had this happen to him. I knew very little about it at the time, but the more I research and learn about this devistating disease, the more I thank God that I still have him today.

I'm from: Middleburg, FL USA

Email: - LChapala@aol.com

How I found the page: - lookimg up "Flesh eating disease"

Aug 6, 1998 - 18:47

My name is: ebc

Comments about the web site: I ended up having severe Cellulitis from a deep puncture wound from coral while swimming in the warm tropical saltwater.....the phsician treating my injuries left the coral in wound and sutured. The physician did not order any x-rays or imaging scans...... so by leaving the embedded coral sutured in leg wound....not only did I develop severe marine Cellulitis within 2 days of injury... but it lead to also developing necrotizing fasciitis... which finally ended up having surgery to remove coral and gangrene after a CT Scan showed 3 pieces of coral inside sutured wound!!!!! During surgery surgeon also found necrotic tissue surrounding the embedded coral, and this too had to be removed.. My recovery has been slow, and very painful..... Since I also have congenital UPJ obstructions and have had to have numerous surgeries and a recent kidney operation (pyeloplasty)... I am more prone to develop infections. I requested antibioitcs at the time of sutures... but the physician would not give me antibiotics or pain medicine. So even after being treated several days later with IV antibioitcs and antibiotics to take at home, and very detailed wound therapy after embedded coral and gangrene were removed..... I ended up with secondary infections to my kidney, bladder and urinary track...I am still being treated for these secondary infections today...... I never knew that swimming in the warm tropical saltwater could lead to a devistating marine infections........I also did not know that a puncture wound from coral could be so serious if left in sutured wound...... So unfortantely, from a puncture wound from embedded coral lead to marine Cellulitis and necrotizing fasciitis... I would like to know if I am the only one that this has happened to.....or if there are other people who have experienced this painful infection due to coral being left inside sutured wound..... I hope this doesn't happen to anyone else... The beach can be a very serious life threatening experience... I just never had any idea that the salt water could develop life threatening infections and that living organisms like coral could create such a painful marine infection and slow healing wounds.. Please e-mail me if you know of anyone how has had a coral injury.... even if it didn't develop into a marine infection... I am curious as to how their coral injury was treated.....Thanks!

I'm from: Florida

Email: - ebc@isgroup.net

How I found the page: - word search for necrotizing fasciitis

Aug 10, 1998 - 01:28

My name is: Scott Sayre

Comments about the web site: July 30th my dad, Robert E. Sayre died from this disease and ARDS. I hope you are able to let others know of this deadly disease. Thank you for your work.

I'm from: Wichita , Kansas

Email: -

How I found the page: - Searching the disease on the internet

Aug 11, 1998 - 00:31

My name is: Michele Knappmeyer

Comments about the web site: I contracted NF about 6 1/2 weeks ago through a very small opening in my right elbow. The bacteria moved quickly and caused extensive damage to my forearm. I had a swollen elbow one day, got in to see the doctor the same day, he sent me to an orthopedic surgeon that afternoon who sent me home insisting that I had the flu and just an infection in my elbow that could be taken care of with antibiotics. The very next night I ended up having emergency surgery and another surgery the following night. I was in intensive care for about three days, they even transfered me to another hospital to try a hyperbaric oxygen chamber (which I could not stand and only stayed in for about 15 minutes)the morning after my first surgery. I was in the hospital for two weeks and in that time went through four surgeries, the last one included a skin graft. My doctors have referred me to a plastic surgeon to correct the large defect left on my forearm. After reading the entries to this registry it sounds like I am one of the lucky ones. I thank God for getting my husband and I through this. This experience was just as hard on him. I pray that doctors become more able to recognize the symptoms early so no one else will have to suffer or lose their life. I also hope that more people become familiar with the illness and take symptoms seriously so as to seek treatment imediately, it can save their life.

I'm from: Springfield, Illinois

Email: - Danshel@proigy.net

How I found the page: - by searching for info on NF

Aug 11, 1998 - 16:25

My name is: John Bowen Jr.

Comments about the web site: Thank you for making a very important and informative website on this very dangerous condition. I'm sure it will save lives.

I'm from: Wernersville PA. USA

Email: - Voclizr@aol.com

How I found the page: - Very informative and interesting.

Aug 11, 1998 - 18:14

My name is: Brad Morgan

Comments about the web site: I lost my fiance to NF on July 23.She was a very healthy 27 yrs old.This was caused by misdiagnoses by 2 different doctors.THIS MUST BE STOPPED!They must learn to look further than the basic symtomes.I miss her very deeply.My heart goes out to those who also have had losses to this deadly virus.

I'm from: Columbus Ohio

Email: -

How I found the page: - keyword necrotizing

Aug 12, 1998 - 06:12

My name is: Dr Barry Barclay

Comments about the web site: One of the main projects my company is focussed on over the next two years (Planet Biotechnologies Inc) is an attempt to develop a rapid diagnostic system for necrotizing fasciitis causing micro-organisms.We hope to be in clinical trials in 12-18 months.

I'm from: Edmonton Alberta Canada

Email: - bbarcla@ibm.net

How I found the page: - web browser

Aug 12, 1998 - 10:37

My name is: Mary Burge

Comments about the web site: Finally a chat room!"NNFF Chat" is now up and running. It is on ICQ, a wonderful program that has over 15 million subscribers. It is easy to download, install and use. And it is FREEWARE!! If you already have and use ICQ, the number for NNFF Chat is 15994025...just add it to your contact list and watch for me on-line (usually between the hours 8a-3p CST). The room is set up to auto accept chat request, so you won't have to wait to enter it. If you don't have ICQ go to http://www.mirabilis.com/ Add this page to you favorites list for easy access later, it is chocked full of neat information! On this ICQ page you will immediately see some large purple buttons and some smaller blue buttons. Left click on the large purple button "What is ICQ?" Under the first paragraph of text you will see a phrase "For more information read this" Left click on the underlined words 'read this'. On this page, scroll down to the text just under the animated man. Left click on "ICQ Basics" Look for the text FAQ on this page, left click on it to see how easy it is to download. There you will find the underlined question "How do I download" left click. Now scroll down to the text-box "For the New Users" and select your system. Once you have selected your system the next page you see will describe in 'step-by step' easy to understand instructions on downloading, installing and registering your new ICQ program. Now, add the chat room # to your contact list. The number is 15994025 and come chat about any aspect of NF! If you have added the ICQ home-page to your favorites list you can go there to find many tutorials on all the useful functions of your ICQ program. I can be reached through my ICQ communication center at http://wwp.mirabilis.com/15994025 There you can see if i am on-line and page me or leave me a message. You can also send me and e-mail from there. I will be trying to add more time that I am on-line in the evening hours. I am grateful to have an understanding husband that has agreed to give up some of his evening time with me, so I can devote it to the NNFF Chat. I will be looking for ya!

I'm from: Kansas

Email: - mburge@terraworld.net

How I found the page: -

Aug 13, 1998 - 19:40

My name is: Jan Bingel

Comments about the web site: I am a survivor of the disease. It was a rather severe attack.

I'm from: California-USA

Email: - JanGrover@msn.com

How I found the page: - Search Engine

Aug 21, 1998 - 08:39

My name is: Barney Wellbrock

Comments about the web site: I am currently suffering with this horrendous disease. If you have any current information, please e-mail me at the address below.

I'm from: Brisbane,Qld Australia.

Email: - angiejefferson@powerup.com.au

How I found the page: - searching the web.